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MSU coach fighting for unborn daughter with heart defect

Blaine and Ana Maag were excited to find out they were expecting their second child, a new little sister for their 1-year-old daughter, Carsyn. The bad news came seven weeks ago at their 20-week ultrasound.

Ana and Blaine Maag play with daughter Carsyn, age 13 months, at home in Lansing Friday. Ana is pregnant with the couple's second child, Kennedy, who has hypoplastic left heart syndrome.(Photo: Rod Sanford/Lansing State Journal)Buy Photo

Blaine and Ana Maag were excited to find out they were expecting their second child, a new little sister for their 1-year-old daughter, Carsyn.

The bad news came seven weeks ago at their 20-week ultrasound.

The Maags' unborn daughter, Kennedy, is essentially missing half of her heart. She has three separate congenital heart defects, all serious, all posing a significant risk to her survival and her future quality of life.

There is no cure. Kennedy's only chance is heart surgery, possibly while she is in the womb.

"It really flipped our worlds upside down," Ana Maag said.

While they weigh the difficult decision of what will give Kennedy the best chance — and it will likely, Ana says, be in utero surgery — they are also fighting to raise awareness for congenital heart defects.

Outpouring of support

Blaine and Ana Maag were both one-time conference track champions in their events at Ashland University. They left their extended families behind in Ohio when Blaine accepted a part-time coaching job at Grand Valley State, then a full-time assistant coaching position at Michigan State University.

With the distance of many family members and friends weighing on her mind, Ana started a blog to keep them up to date on Kennedy's condition, and to "vent my feelings," she said. Not knowing whether insurance would cover the experimental procedure that might save Kennedy's life, the Maags started a fundraiser to cover medical costs and the costs to travel back and forth from Ann Arbor for doctor's appointments, surgeries and long hospital stays.

"Our goal was $1," Ana said. "Every little bit helps."

Shared through the MSU and Playmakers running communities, the site has raised over $11,000 in the first two weeks.

Blaine Maag said he's been amazed at the outpouring of support from the athletes he works with, the coaching staff at MSU and the community.

"When she's born, she could be in the hospital for a month," Blaine said. "The mortality rate's the highest between those first two surgeries, and I want to try and do everything I can to be there for my wife and daughter."

"There's going to be days where I cannot go to practice, I cannot do my job. But they understand that."

Ana said the thing that has meant the most to her are the families that have reached out to her through her blog to share their stories, to let her know she's not alone.

"There's so many kids that defy the odds," Ana said. "They're given very little chance to live and a lot of them come out on top. And that's what we're hoping for her, that she'll fight and she won't give up."

"She's obviously teaching us a lot about ourselves, and our relationships, and everything in life."

Without the fetal intervention, Kennedy has a 50 percent chance of surviving her first heart surgery after birth. If the procedure is successful, it will improve her chances significantly, doctors told the Maags.

The procedure is risky. It could cause Ana to go into labor, and if Kennedy was born that early, at around 30 weeks, doctors say there would be ultimately nothing they could do. She would be too small, too weak for open heart surgery.

The Maags have a long journey ahead. They've turned to the only thing they have left.

Hope.

"When someone says that we're in their prayers, that means a lot to me, because it's another person in our corner, joining our fight," Blaine said. "It's all we can do."

In a healthy human heart, the left side receives oxygen-rich blood from the lungs and pumps in to the rest of the body, while the right side receives oxygen-deprived blood from the body and pumps it to the lungs. In babies born with hypoplastic left heart syndrome, the left side of the heart is either too small or doesn't exist, so the right side of the heart does double-duty pumping to the lungs and to the body.

It can't last for long. In the first several days of life, the two chambers separate and the right side is no longer able to get oxygen from the lungs to the rest of the body. Without surgical intervention, the condition is fatal.

Heart surgery has advanced by leaps and bounds in recent decades. When the procedure was first developed in the 1980s, doctors would try to surgically bypass the left side of the heart, allowing the right side to pump to the rest of the body, within a baby's first two weeks of life.

Now the procedure in done in three stages over the first 18 months to three years. As the length and complexity of each surgery is decreased, the chances that an infant would survive increase, the Maags said.

Normally, a baby with hypoplastic left heart syndrome would undergo the first of the three surgeries as soon as they're strong enough after birth. But their daughter, Kennedy, has another complication that greatly increases her risk.

Kennedy has an additional defect that occurs in a "very small percentage" of babies with hypoplastic left heart syndrome, according to the C.S. Mott Children's Hospital in Ann Arbor. The pathway that allows blood to flow between both sides of a fetus's heart, normally open until a few days after birth, is closed in Kennedy's heart. Without that opening, pressure will build inside the chambers of her heart, damaging her lungs in the weeks before she is born.

There is an experimental procedure that could increase Kennedy's chances of survival at birth. Worldwide, it has only been done 55 times, Ana Maag said. It involves inserting a long needle through Ana's stomach, through the uterine wall and amniotic sac, through Kennedy's chest and into her heart.

Navigating via sonogram, surgeons will inflate a tiny balloon and insert a shunt into the wall of Kennedy's grape-sized heart. The shunt will keep that pathway between the left and right sides of the heart open, relieving pressure on her lungs until she is born.